Masking and performing or 'management strategies' in ME/CFS (and being in positions where required or led to do so)

[bobbler]

I've put this in advocacy for now, having read another article on autism in females where this concept is noted a lot. As a concept of people basically realising [from an early age with autism] they need to 'fake it' or it makes their life easier how does this translate to ME/CFS?

Is there more than just the 'you don't see us on a bad day'. There are complex reasons we have to keep ourselves safe in certain ways, and why when these occur we mightn't have the privilege of our 'full health/skillset' and so e.g. can't actually give a thought-through answer to that question, or don't have the health/physical strength there and then to protect ourselves by standing up for pointing out something being wrong or incorrect.

I almost think of it as egg-timer and like being in a foreign country where you know just enough of the language to get you into trouble by asking a question really convincingly then getting back an answer assuming you can speak to a higher level than you can. Because your energy ration runs down differently depending on standing/sitting, speed of delivery, how complex, lights it isn't a perfect estimate anyone can get right.

Given all the horrible things that go with not faking it I imagine in the scenario-specific as well as the 'coming out' I'm almost consciously making mathematical decisions about whether mentioning the issue and its reaction would have net benefit vs not.

I've suggested 'performing' (yet hope people know what I mean by masking) because given what I'm describing is actually very different to autism (though I wonder if there are overlaps on the sensory being painful/exhausting) I'm not suggesting hijacking their term for a different definition as it wouldn't be fair, would ruin that term for all, and there are other complications. But it might be useful to describe as a different angle of topic from usual for ME/CFS but also one to try and get people relate to our 'lived world' that we get to experience vs assumptions those might think they see from the outside.

But does anyone else feel like this approx area has some mileage - particularly for developing a vocab and concepts to communicate awkward situations and circumstances that arise from the cognitive+physical/central exhaustion combined with being faced with certain actions/things being thrown at us?

 

[bobbler]

I've noted choosing advocacy, because I suspect this plays a big part in usage of subjective scales particularly when it combines with the PEM and fatiguability (making us vulnerable to think we need to get out of there, but full weight not yet hit). ie the well-known 'nod and leave' combines with this.

I know that the horrible CBT 'habit' of 'walking people into saying things' is awful and violating for me once I've hit my threshold of interaction (speed or time) and I'm basically getting 'puppeted' - whether the individual doing it has a clue that's the impact or not (because of how the technique's got embedded and sold to certain professions). Those sorts of things would maybe be easier to explain with useful terms that highlight the issue more gently and without the potential to get twisted into being claimed as 'accusations'.

Plus of course the constructed world and peer pressures that the 2007 BPS ideology and constant media of that puts people in. So those 'net benefit/loss' calcs are not in any way not interactive to misinformation on the condition/bigotry (and not knowing who is or isn't of what persuasion)/hill of understanding and so on.

But given so many outsiders 'fail to see' (and probably those with ME/CFS about themselves early day, and certainly about others - when different severities and symptoms) would this concept be a useful 'no blame' way/vehicle of explaining at least part of why.

 

[bobbler]

I'm realising this is turning a bit monologue now but I've just wondered whether the term might be something along the lines of 'passing' or 'being passable' (knowing we have to smile and 'be polite' ie act a certain way in an over-exertion situation to be accepted/unwritten expectations that do not fit with our health, and just slink off and take the over-exertion quitely then collapse somewhere for days) although it feels more like sometimes we are being forced into it by others almost at threat of oppobrium (more energy) and sometimes it is 'cajoled' by others, and it is less high-energy than 'performing' infers

 

[bobbler]

I've recently seen quite a few social media short videos on masking for ADHD or ASD and am beginning to think more and more that this would be a useful topic for a group at some point to think about whether could be done for different levels of ME

I've also just read and post (in the GP resources) the following: ME/CFS South Australia Inc: For The Provider: Working With Patients With ME/CFS And Their Caregivers (sacfs.asn.au)

I hope that it is OK to paste the list of points they have but I think it is very good and relevant to note in full (and there may be more on top we can add to this):

1. A patient who has had ME/CFS for a long time will have adjusted to a new normal. Thus, responses like “I’m okay, thanks,” need to be interpreted as expressing what is normal for them and not what would be okay for someone who suddenly contracted this illness and was reporting on it the next day.
2. Similarly, if patients are asked to record symptoms on a chart, they are likely to note their level of exhaustion at a 3 when to anyone else it would be a 7.
   
3. The effects of exertion on a patient are often not apparent until a couple of days later. Thus, a patient who has rested up to come to an appointment will be at the highest end of their functioning and not demonstrating their usual functioning.
   
4. Patients with ME/CFS often do not have the energy to prepare questions for their appointment. Thus, it is important to ask them or a caregiver to note questions as they occur and to bring in these notes to the appointment.
   
5. Patients with ME/CFS often cannot easily retain information. Thus, they may forget information shared during the appointment within a short time if it is not written down.
   
6. Patients with ME/CFS are used to trying to act ok when they are with other people. Thus, it is hard to tell how they are feeling. They may often get so tired during the appointment that they will zone out and not really hear what is being said even though they appear to be fully present.
   
7. Because they are so exhausted (often from getting cleaned up and traveling to the appointment), they often do not have the energy to discuss options or, if they disagree with something that is said, to dispute it, so it may seem that they are agreeing when in fact they may not be.
   
8. Patients with ME/CFS have often been treated dismissively, disbelieved, and talked down to. As a result, they are often wary of speaking up again.

which also notes points that relate to the importance of people understanding masking and indeed the coercive influences we have that sometimes 'insist' on it [and indeed courses such as CBT that programme people to do it], and dilemmas people have due to social pressures where 'norming' or 'masking' will mean added exertion but less so than the fall-out from not.

 

[Keela Too]

This is an interesting concept.

I think everything I do is “managed” to make it possible. If I end up in an environment where I’m overstimulated (noise seems worst for me) I can quickly slide. Obviously, I want to leave that environment before I go wonky, cos I’d rather not be seen wonky in public. (And obviously also want to avoid the later miseries ).

I’m now very wary of putting myself in environments that I cannot easily extract myself from and I’m remarkably good at saying NO!

Is this sort of what you mean?

The “me” that people see, is the one that is okay, but it is okay because I have carefully control what I do, and because I know how I’m likely to respond to certain events, and I have mitigations in place.

I might look normal (-ish), but what people see is not the whole story. Energy Management is something that must be as conscientiously attended to, as a diabetic needs to manage their sugar levels.

I do share this need to manage my environment with folk around me. So maybe I don’t hide my condition all that much. That said, I don’t think anyone but close family understands the extent of the down-time that supports the smaller activity times.

I’m not sure if that is really the same as masking, or making myself passable?

 

[Sean]

Very important thread.

Thanks for starting it, @bobbler.

 

[Andy]

I'm not sure how on-topic this comment will be, but I'm aware that I limit, or at least try to, how much emotion I feel, both positive and negative, given how much energy emotions cost. I suppose that could be argued to be a management strategy, or even pacing. All I know is that I can achieve my most when as many different factors as possible are within certain boundaries, and this includes how much emotion I experience.

Or perhaps this is just evidence of how weird I am!

 

[Keela Too]

I'm not sure how on-topic this comment will be, but I'm aware that I limit, or at least try to, how much emotion I feel, both positive and negative, given how much energy emotions cost. I suppose that could be argued to be a management strategy, or even pacing. All I know is that I can achieve my most when as many different factors as possible are within certain boundaries, and this includes how much emotion I experience.

THIS!!
Yes totally!

 

[Trish]

I'm not sure how on-topic this comment will be, but I'm aware that I limit, or at least try to, how much emotion I feel, both positive and negative, given how much energy emotions cost. I suppose that could be argued to be a management strategy, or even pacing. All I know is that I can achieve my most when as many different factors as possible are within certain boundaries, and this includes how much emotion I experience.

Or perhaps this is just evidence of how weird I am!

Definitely not weird, unless I am too. I leave others to judge that about me. Pacing, for me, involves largely physical pacing, since my physical fatiguablity incapacitates me much more rapidly than cognitive fatiguability. I don't know whether there is a concept 'emotional fatiguabilty' but I certainly experience it.

I pace myself where possible emotionally by focusing on living each day as it comes and not spending time reminiscing about better times or railing against my fate. And I avoid fiction in books or TV that will stir stong emotions. My longest lasting ME crashes lasting a year or more have been triggered by big emotional upheavals, though my shorter term (days or weeks) more physically and cognitively disabling crashes and long term decline are more related to pushing the envelope physically, I think.

 

[Ash]

I've recently seen quite a few social media short videos on masking for ADHD or ASD and am beginning to think more and more that this would be a useful topic for a group at some point to think about whether could be done for different levels of ME

I've also just read and post (in the GP resources) the following: ME/CFS South Australia Inc: For The Provider: Working With Patients With ME/CFS And Their Caregivers (sacfs.asn.au)

I hope that it is OK to paste the list of points they have but I think it is very good and relevant to note in full (and there may be more on top we can add to this):



which also notes points that relate to the importance of people understanding masking and indeed the coercive influences we have that sometimes 'insist' on it [and indeed courses such as CBT that programme people to do it], and dilemmas people have due to social pressures where 'norming' or 'masking' will mean added exertion but less so than the fall-out from not.

This is an excellent list.

Also thanks for the thread here.

I wonder if it’s internal limit implementation, for survival and or to maintain function. Consciously or unconsciously maintaining distance from internal boundaries. Getting close to these a sign of having stretched too far.

A performance is required by society, a performance of physical and mental strength.

A performance is a high energy undertaking. It has enormous costs physical and emotionally.

Once you’ve reached your physical or mental limits and can no longer perform, you are also at increased risk of losing the autonomy that allows you to set your own limits.

As you become more and more severely ill, less robust in your presentation to others, you are becoming more dependent upon others, who in such a society that often demands the performance of strength as a requirement for recognition and respect, may or may not respect your internal limits.

So the performance perhaps is keeping others away from your boundaries and limits from the outside in and so is part of a whole with internal limit setting.


I am fatigued now, sorry but above @bobbler you asked if the process was less energy intensive than performance, I don’t think so though. I think along with some other words performance captures it very well. Especially considering one might talk about ‘performing’ everyday tasks performing an action of some kind. To refuse is an act, just as to accept is an act.

 

[Ash]

I forgot to add something that may or may not go without saying;

Everyone performs that is part of existing. It’s a neutral.
But having to perform wellness while you’re unwell in the face of a long term or life long illness is not part of routine performance levels. There are many reasons people are forced into extreme and rigid performance by their position in societies artificial hierarchies. This extra burden applies to everyone who suffers under oppressive conditions.

So I think the interesting thing about looking at our particular challenges is how our survival behaviour affects our ability to carry out other necessary functions. When it isn’t always, perhaps mostly isn’t possible to maintain it all.

How we could possibly compensate for or accommodate this reality better through a conscious examination and sharing of this experience.

Also these survival strategies are some of the most frequently referenced aspects of our presentation when professionals are interested in justifying their negative responses towards our attempts to access social supports and medical care. So worth re framing this specifically for ourselves. As self defence.

 

[bobbler]

Not directly relevant but saw this and liked it and wanted to remember the thought!




it’s someone doing a video of how they made their home ADHD friendly/ADHD friendly house hacks. As I’ve just googled it because the old link didn’t work I’ve seen there are loads of different ones like this along this theme.

struck me that these have more than one purpose/potential audience.

yes it might be great (if doing similar themes for ME of what we can we adapt and why) for others with ME or new to it and to exchange ideas and experiences. It also helps to combat the grim unkind tropes of ‘what those with ME are like’ I guess as we are all just people in varied shapes and forms just like everyone else, except poorly with ME

and maybe even as patient-led content that advocates could point to eg services and OTs etc hearing and seeing. Both as ideas but maybe as people on by for bad advice/misguided non patient-led but coming from the head of someone who had presumptions about ME in the past ‘advice’ to be shown up etc

3. this sort of thing helps me try and get the penny-drop of what is ADHD and how it affects people. So I think this could be good for communicating to layperskns what the condition causes limitation-wise. As well as showing how tenacious and stoical we are and how people can help or harm just with the small things or attitudes affecting these adding up for those with energy-limiting conditions. I mean how else do you communicate where the things people have to use often are put at work will affect those with ME just by that accumulating energy use. Or the draining on battery affect of light or noise.